You are currently viewing our boards as a guest which gives you limited access to view most discussions and access our other features. By joining our free community you will have access to post topics, communicate privately with other members (PM), respond to polls, upload content and access many other special features. Registration is fast, simple and absolutely free so please, join our community today!

If you have any problems with the registration process or your account login, please contact contact us.

If this is your first visit, be sure to
check out the FAQ by clicking the
link above. You may have to register
before you can post: click the register link above to proceed. To start viewing messages,
select the forum that you want to visit from the selection below.

Ritzbit...is this an old post as I thought I had replied to you about all this??? I hope you are doing better and finding your way through real and fair weather friends. You know you can always talk to me or anyone on this site and we are here for you! How is your mom doing? I really hope you are better and doing better? Send me a message and let me know how everything is!

i understand...

I turned 21 in december & thought it would be so much fun..party & this summer..beach & vacation!

Then around Easter I had unbelievable joint pain.. couldnt move at all. I went to dr, got steroids & meds and it kind of got better. It was a day by day situation. It wasnt until i was so sick, i didnt eat or get out of bed, lost 20 lbs (i had no idea what was wrong) & finally went to hospital, rheumy told me i had Lupus & i thought my life was over.

I live in a town where everyone knows everyone's business, so I am afraid to go out & get questioned by peers. I stay at home, I give the guy im seeing an attitude all the time, I cry a lot...

I wont go out with friends because im afraid. Afraid ill get too tired or not feel well.. They seem to rarely call much anyway. And i dont tell anyone i have it because I dont even really know how to explain it and i dont want to talk about it/say it aloud..

reading your post, i literally was crying because i feel the same. My friends kind of label me.."sick" and its hard. Getting news so young is so hard too..

I just got on the site, so i dont know it too well but if you need, email or message me.

I turned 21 in december & thought it would be so much fun..party & this summer..beach & vacation!

Then around Easter I had unbelievable joint pain.. couldnt move at all. I went to dr, got steroids & meds and it kind of got better. It was a day by day situation. It wasnt until i was so sick, i didnt eat or get out of bed, lost 20 lbs (i had no idea what was wrong) & finally went to hospital, rheumy told me i had Lupus & i thought my life was over.

I live in a town where everyone knows everyone's business, so I am afraid to go out & get questioned by peers. I stay at home, I give the guy im seeing an attitude all the time, I cry a lot...

I wont go out with friends because im afraid. Afraid ill get too tired or not feel well.. They seem to rarely call much anyway. And i dont tell anyone i have it because I dont even really know how to explain it and i dont want to talk about it/say it aloud..

reading your post, i literally was crying because i feel the same. My friends kind of label me.."sick" and its hard. Getting news so young is so hard too..

I just got on the site, so i dont know it too well but if you need, email or message me.

I was pumped for summer too. I love swimming and laying out and all that, and now Im butt white and sit in the shade most of the time while Im at the pool.

I wouldnt worry about what anyone says. Your sick. And its none of their business unless you want to talk to them about it. After I found out I was sick I think I really realized who my real friends were becuz some people just decided they couldnt deal with me being upset once I got the news.

I always feel like Im the one bumming everyone when we're hanging out becuz I get tired and dizzy and sometimes cant do that much. But if you have someone who really cares they'll understand. And I know what you mean about not wanting to even say it. The day after I found out I couldnt look anyone in the eye when I told them what I had, and I dont like when people bring it up.

But thats what is so awesome about this site =D everyone is so helpful and everyone on here will listen when you need to vent or when your not feeling the best.

hi

Im wondering can you not put fake tan on,then use the high factor sunscreen in the day when out? Then you'll be tanned and noone will know? Or is this a bad idea from me? Just a thought.I do it,but then i eat lots of chocolate too...let me know what you think.xxxx

I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

Your story sounds far too familiar and it seems like that's the case for most of us diagnosed with SLE.

I found out about my SLE diagnosis my first day of college. It was my first time out of my small town and without a support system. I was put on copious amounts of Prednisone and gained about 15 pounds. I never had great self esteem, but this completely murdered what little I had. I spent my freshman year of college in my room crying in bed, contemplating the worthlessness of life when my medications were worse than my disease. I was constantly depressed, nauseous, exhausted and yet restless and many times with debilitating joint pain (but i'd still torture myself at the gym 2 hours a day trying to lose weight and instead hurting myself more.) It was horrible.

Then my sophomore year, I realized that I had gained nothing my freshman year. All I had done was rob people the joy of spending time with me. You are a worthwhile, wonderful person with a disease that is not rare and not a death sentence. Be optimistic. Do what you can and be grateful for everything. Sure, most of our quality of life has been hindered, but I still live everyday better than many in the world.

We are all here for you and can relate to you. If I can help in anyway, please let me know. I know everyday is a battle.

Hanging in there

I dont have lupus, but im with someone who does. ive seen changes on her and im sadden that my girl is in pain in all kinds of levels.

today when she had one of her moods and took it out on me, instead of me thinking about how i miss the girl i love, i took a step back and felt that not only my life has changed, but her life has changed as well.

what hurts me more is that i couldn't make her pain go away.

so i took the next step and googled lupus and it led me here tonight. Ive done research and im starting to gain some kind of knowledge of what lupus is. im going to show her this website and hope it will guide us in gaining a better understand on handling lupus together.

As a boyfriend who is with someone who has lupus, i find it hard to handle her stress and mine at the same time. it isn't easy having lupus, it isnt easy watching the person you've been with for so many years live everyday with pain isn't easy to watch. i've told her that im staying with her and im not planning on going anywhere, despite the hardship that has yet to come.

Have faith and all will be well..... everything happens for a reason and in most cases, its for the right reasons.